Balance

Following my "Village" post of several days ago, there were several comments that spoke of the suffering of children in NICU's. If read with other comments previously published in my blog, someone who didn't know better might think that NICU's were nothing but houses of suffering for hopeless children and that neonatologists were mad scientists who delighted in tormenting them. I exaggerate, but sometimes comments are pretty critical of neonatology, which can bother me and, I'm sure, some of the NICU nurses who read this blog and who, like me, are trying to do their best for these children. I think it is only fair, then, that in this post I give a more balanced view of the NICU.

First of all, a balanced view of neonatology and NICU's would acknowledge that more of our kids than we would like turn out to have less than optimal outcomes. Cognitive deficits seem to be especially common, and other entities like cerebral palsy and learning disabilities are more common than we would like. A balanced view can also understand how people whose NICU graduates have had bad outcomes may be frustrated by that and want to be sure that parents of potential premies hear the whole truth. But a balanced view would also acknowledge that not every micropremie has a bad outcome. Many turn out to be normal, and many of those who are not normal are still worthwhile human beings who bring joy to their families.

A balanced view would also recognize that when we discuss outcomes data with parents we must include everything. The Epicure study is often mentioned by commenters on this blog. It is fair to discuss that, but it's also fair to note that in the Epicure study too few prenatal steroids and too many postnatal steroids were used, and the survival rates in that study were very low, much lower than current Vermont Oxford Network data. Is the Epicure study indicative of how today's kids will turn out, or will they be more like the children from the University of Iowa's NICU, which claims much better survival and disability rates? I don't know, but I have to consider many sources of data when discussing possible outcomes with parents.

As for resuscitating babies of extremely low gestations, a balanced view would recognize that there are some very tough decisions to be made at that time and that it is not at all easy to decide which kids to resuscitate. Far from being uncaring people who resuscitate kids without regard for their outcomes or parents' wishes, most neonatologists struggle with this. Every time I resuscitate a 23 weeker I wonder if I'm doing the right thing. Will this be a good outcome? A good enough outcome? What is a good enough outcome? Also, please realize that I don't want to save children who will live a life of suffering, but neither do I want to discriminate against the handicapped, and there is a fine line between the two.

As far as pain and suffering goes in the NICU, does it occur? Of course it does, like in any ICU, adult or pediatric, but that doesn't mean that the life of a premature baby in the NICU is one suffering moment after another. We have made tremendous strides in pain management, although we also have a long way to go. Many more kids are treated with pain meds than in the past. However, in spite of ooodles of research in this area, we still don't have a great pain scoring system for premature children, and we need more research into when pain meds do more good than harm in terms of developmental outcomes. Discomfort and pain are associated with being on a ventilator with an endotracheal tube in place, yes, but it is also not unusual for me to examine a ventilated baby and have him yawn at me as if to say, hey, can I get back to my nap now? And when kids do suffer, although we don't like it that they do, we have to recognize what we are trying to accomplish: we are trying to preserve and give them life, that most precious of commodities.

Let me close this post by saying what I have said before. We resuscitate and care for these kids because the parents want us to. Comments on previous posts give examples of neonatologists who kept treating preterm babies against their parents' wishes, but in my experience those cases are by far the exception more than the rule. It is much more common for a parent to want to continue treatment in a hopeless situation than it is for the neonatologist. I remember one case of a baby born too soon whose mother wanted me to continue the ventilator even after the baby's heart beat had stopped and I had pronounced him dead. I recognize the reasons for that mother's sorrow and desire to keep the ventilator going; please recognize that I'm just trying hard to do the right thing.